BRCA1/2 Variant Data-Sharing Practices.
Ontology highlight
ABSTRACT:
SUBMITTER: Bollinger JM
PROVIDER: S-EPMC6748872 | biostudies-literature | 2019 Mar
REPOSITORIES: biostudies-literature
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Project description:Research transparency, reproducibility, and data sharing uphold core principles of science at a time when the integrity of scientific research is being questioned. This article discusses how research data in psychology can be made accessible for reproducibility and reanalysis by describing practical ways to overcome barriers to data sharing. We examine key issues surrounding the sharing of data such as who owns research data, how to protect the confidentiality of the research participant, how to give appropriate credit to the data creator, how to deal with metadata and codebooks, how to address provenance, and other specifics such as versioning and file formats. The protection of research subjects is a fundamental obligation, and we explain frameworks and procedures designed to protect against the harms that may result from disclosure of confidential information. We also advocate greater recognition for data creators and the authors of program code used in the management and analysis of data. We argue that research data and program code are important scientific contributions that should be cited in the same way as publications. (PsycINFO Database Record
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Project description:BACKGROUND: Scientific research in the 21st century is more data intensive and collaborative than in the past. It is important to study the data practices of researchers--data accessibility, discovery, re-use, preservation and, particularly, data sharing. Data sharing is a valuable part of the scientific method allowing for verification of results and extending research from prior results. METHODOLOGY/PRINCIPAL FINDINGS: A total of 1329 scientists participated in this survey exploring current data sharing practices and perceptions of the barriers and enablers of data sharing. Scientists do not make their data electronically available to others for various reasons, including insufficient time and lack of funding. Most respondents are satisfied with their current processes for the initial and short-term parts of the data or research lifecycle (collecting their research data; searching for, describing or cataloging, analyzing, and short-term storage of their data) but are not satisfied with long-term data preservation. Many organizations do not provide support to their researchers for data management both in the short- and long-term. If certain conditions are met (such as formal citation and sharing reprints) respondents agree they are willing to share their data. There are also significant differences and approaches in data management practices based on primary funding agency, subject discipline, age, work focus, and world region. CONCLUSIONS/SIGNIFICANCE: Barriers to effective data sharing and preservation are deeply rooted in the practices and culture of the research process as well as the researchers themselves. New mandates for data management plans from NSF and other federal agencies and world-wide attention to the need to share and preserve data could lead to changes. Large scale programs, such as the NSF-sponsored DataNET (including projects like DataONE) will both bring attention and resources to the issue and make it easier for scientists to apply sound data management principles.
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Project description:BackgroundAlthough the use of patient-generated data (PGD) in the optimization of patient care shows great promise, little is known about whether patients who track their PGD necessarily share the data with their clinicians. Meanwhile, health literacy-an important construct that captures an individual's ability to manage their health and to engage with their health care providers-has often been neglected in prior studies focused on PGD tracking and sharing. To leverage the full potential of PGD, it is necessary to bridge the gap between patients' data tracking and data sharing practices by first understanding the interrelationships between these practices and the factors contributing to these practices.ObjectiveThis study aims to systematically examine the interrelationships between PGD tracking practices, data sharing practices, and health literacy among individual patients.MethodsWe surveyed 109 patients at the time they met with a clinician at a university health center, unlike prior research that often examined patients' retrospective experience after some time had passed since their clinic visit. The survey consisted of 39 questions asking patients about their PGD tracking and sharing practices based on their current clinical encounter. The survey also contained questions related to the participants' health literacy. All the participants completed the survey on a tablet device. The onsite survey study enabled us to collect ecologically valid data based on patients' immediate experiences situated within their clinic visit.ResultsWe found no evidence that tracking PGD was related to self-reports of having sufficient information to manage one's health; however, the number of data types participants tracked positively related to their self-assessed ability to actively engage with health care providers. Participants' data tracking practices and their health literacy did not relate to their data sharing practices; however, their ability to engage with health care providers positively related to their willingness to share their data with clinicians in the future. Participants reported several benefits of, and barriers to, sharing their PGD with clinicians.ConclusionsAlthough tracking PGD could help patients better engage with health care providers, it may not provide patients with sufficient information to manage their health. The gaps between tracking and sharing PGD with health care providers call for efforts to inform patients of how their data relate to their health and to facilitate efficient clinician-patient communication. To realize the full potential of PGD and to promote individuals' health literacy, empowering patients to effectively track and share their PGD is important-both technologies and health care providers can play important roles.
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| S-EPMC6817515 | biostudies-literature
Project description:Data sharing is one of the cornerstones of modern science that enables large-scale analyses and reproducibility. We evaluated data availability in research articles across nine disciplines in Nature and Science magazines and recorded corresponding authors' concerns, requests and reasons for declining data sharing. Although data sharing has improved in the last decade and particularly in recent years, data availability and willingness to share data still differ greatly among disciplines. We observed that statements of data availability upon (reasonable) request are inefficient and should not be allowed by journals. To improve data sharing at the time of manuscript acceptance, researchers should be better motivated to release their data with real benefits such as recognition, or bonus points in grant and job applications. We recommend that data management costs should be covered by funding agencies; publicly available research data ought to be included in the evaluation of applications; and surveillance of data sharing should be enforced by both academic publishers and funders. These cross-discipline survey data are available from the plutoF repository.
| S-EPMC8381906 | biostudies-literature
Project description:Purpose:The main focus of this study is to assess the knowledge and practices of healthcare practitioners regarding data sharing, security, and confidentiality, with a focus on the use of health data retrieved from electronic health records (EHRs) for research purposes. Methods:A descriptive, cross-sectional, questionnaire-based survey study was conducted across all academic institutions including all researchers in the medical field in Jordan. Personal and administrative practices in data sharing were assessed through collecting data from respondents. Results:The response rate was 22% with an average of 10.25 years of experience in publications. Almost 60% had published at least 1 to 3 studies using EHRs. The prevalence of researchers who "Always" used antivirus software and preserved patient's information was 75.5% and 92.2%, respectively. However, other personal security and confidentiality measures were not satisfactory. Less than half of health data used in the research was "Always" anonymised or encrypted and only around 44.0% had "Always" used sensitive data with more specificity than normal data. Conclusion:Confidentiality and data sharing practices of healthcare practitioners and researchers were generally less than optimal. Efforts from healthcare providers, health institutions, and lawmakers should be put in place to protect the security and confidentiality of electronic patient data.
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Project description:Research data is increasingly viewed as an important scholarly output. While a growing body of studies have investigated researcher practices and perceptions related to data sharing, information about data-related practices throughout the research process (including data collection and analysis) remains largely anecdotal. Building on our previous study of data practices in neuroimaging research, we conducted a survey of data management practices in the field of psychology. Our survey included questions about the type(s) of data collected, the tools used for data analysis, practices related to data organization, maintaining documentation, backup procedures, and long-term archiving of research materials. Our results demonstrate the complexity of managing and sharing data in psychology. Data is collected in multifarious forms from human participants, analyzed using a range of software tools, and archived in formats that may become obsolete. As individuals, our participants demonstrated relatively good data management practices, however they also indicated that there was little standardization within their research group. Participants generally indicated that they were willing to change their current practices in light of new technologies, opportunities, or requirements.
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